Agenda Friday 28 September 2018
PCRI conference, roundtable
You must dial in - we do NOT dial you.
Landline - Anywhere in Australia - 25 cents 1300 663 845 (landline call from anywhere in Australia) (cost 25 cents) 7701# Conference number 7701# Password
Mobile phone - only inside these major capital cities - your phone plan cost Perth (mobile call from inside Perth see warning below) 08 6103 8751
Brisbane (mobile call from inside Brisbane see warning below) 07 3166 2169 Sydney (mobile call from inside Sydney see warning below) 02 9438 7077
Canberra (mobile call from inside Canberra see warning below) 02 6112 6899 Melbourne (mobile call from inside Melbourne see warning below)
03 9948 2088
Adelaide (mobile call from inside Adelaide see warning below) 08 7002 8702 7701# Conference number 7701# Password
Overseas members: Use the Sydney mobile number above. Test out the number sometime before. If your Conference number and Password are accepted, you should be great to go.
Maybe you haven't had access to the agenda or you have late breaking news you would like to share. Tell the chairman here at the beginning of the meeting that you would like to speak, and he will fit you in - probably later, perhaps right now if that suits.
The Prostate Cancer Research Institute (PCRI) runs the biggest prostate cancer patient conference in the world every September. The PCRI was started by prostate cancer doctors committed to empowering patients with appropriate information.
Well known medical oncologists Stephen Strum, Snuffy Myers and Mark Scholz were among the founders.
Each year a number of Australians make their way to the conference in Los Angeles, USA. This year there were five of us. Jim Marshall and Tony Maxwell were there, and will give a short report.
Roundtable - new stories, updates, questions
Any man who wishes is welcome to contribute here. Tell us your story. Update your story. Ask a question.
The Chair will declare the formal part of the teleconference closed at his discretion, perhaps around 11am. The teleconference lines will be kept open until at least 11:30 for anyone who wishes to continue discussions, update his health, or just chat.
Any topic you like - topics we didn't reach, something discussed earlier you wish to comment on, an update on your health, how your new boat is going, moaning about the weather, anything that you wish to say.
This Community does not give medical advice. No members are authorised to give medical advice. Ask your doctor if you hear anything here that you think may be related to your treatment.
9:30am - 11:00am Eastern Standard Time (Queensland)
The formal phone-in meeting ends after 90 minutes.
The lines are kept open for up to an hour after that for members to informally chat.
Daylight savings times
Sydney, Melbourne, Hobart: 10:30am Adelaide, 10:00am
Perth 7:30am Winter times Brisbane 9:30am
Sydney, Melbourne, Hobart 9:30am Adelaide 9:00am
Perth 7:30am Daylight saving ends first Sunday in April Daylight saving starts first Sunday in October
Mobile phone warning
The costs of mobile calls are nothing to do with the Advanced Prostate Cancer Support Group or with PCFA. They are between you and your phone provider (Optus, Telstra, Virgin, Vodafone, etc).
If you dial one of the capital city numbers given above from a mobile phone, the cost to you will be the cost on your mobile phone plan. If your plan gives you free, or low cost local calls, and you are in one of these cities, it should be free, or a local call. If your plan gives you free, or local cost national calls that should work too.
Be sure - call your provider, give the number you might be calling, and check the cost for you to call that number.
We want many voices to be heard. If you are a member listed to speak below, the chair will probably expect you to take no more than about 5 minutes on presentation so there is plenty of time for others to respond.
Special Guest Speakers are invited to speak for 10-15 minutes, then field questions.
House - radio, TV, computer, pets, other phones, conversation Yourself - mute button, or mouthpiece away from mouth Phone - call waiting off (#43#), Mute button or hang up to leave the room. No mute button? ##4 to mute, ##5 to unmute. Cordless phone - don't carry, put on folded handkerchief to limit reverberation Other calls - Please do NOT use call waiting or another line on the same phone to take another call - members around Australia are left listening to your 'hold' music until you return.
Please do NOT use a speaker phone, unless you are very good at keeping it Mute, and at lifting and using the hand piece when you wish to join in the conversation. Mobile phone
You will need enough charge for the length of the call, or take the call with your charger plugged in. Speaking Speak clearly into mouthpiece in ordinary voice.
Say who you are when signing in, and each time you speak.
Listen for the gavel. The Chair may need to interrupt.
It's a meeting of 20 people, not a simple phone conversation. If you are not one of the two people in the particular conversation at the time, keep your mute button down and let others contribute.
Help the secretary by later emailing details for the minutes.Restarting You may hang up and sign in again as many times as necessary. Sometimes we may have to restart the meeting - dial in again. With everyone calling at once you may need to try more than once.
Future phone-in support group meetings
Fourth Friday of each month, except:
January (one week late for Australia Day, making 2 meetings in February), and
December (one week early for Christmas).
Phone-in support group meeting dates 2018
November 23 (not the last Friday)
December 14 (one week early for Christmas)
Changes or questions
If you wish to update us about any changes in your health or treatment, or have a question you would like answered or discussed, or you would like to talk about joining a teleconference group, let us know. Then we can put it high on the agenda so it doesn't get lost - just reply to this email, or use Contact Jim on JimJimJimJim.com.
This message has been sent to you because you are a member of the Australian Advanced Prostate Cancer Support Group.
Visit JimJimJimJim.com and click on Contact Jim if this is a problem.
Hi HighCadence, I am on Docetaxel, not Cabazitaxel. Its amazing how many ppl in chat groups get spelling wrong and thetwo drugs mistaken for each other. Here, Docetaxel is first chemo drug, and if it does not work they give Cabazitaxel, probably with worse side effects of neuropathy. Thenn next up is Carboplatin, and there's a fourth, and I don't know what that is.
Because Docetaxel appears to me to be useless, I have no faith in moving to Cabazitaxel. But Lu177 might be better, and despite getting a dry mouth after treatments, the total side effects could be less than for chemo. I know a guy who had a neck cancer and had chemo + EBRT and he's hasd a dry mouth for 10 years, but he copes OK and is now 79.
But there's another radio active drug, Actinium225, maybe better than Lu177, see the latest at
I doubt Actinium225 is yet available in Australia.
Another day of fine sunshine here, shed work and a cycle ride to have lunchand life still is OK, despite storm clouds.....
I’m really sorry to hear about the side effects of Cabazitaxel. I think I’m going to give that a miss.
I hope the Lutetium works - please let me know how you get on.
Most important, keep going and don’t give up - you never know what’s around the corner on the treatment front. Keeping yourself in the game for as long as possible is what this is all about.
I am not sure that I have much faith in prognoses. This is possibly because I am only at an early stage in my condition, having only been diagnosed about a year ago. (However, someone who has had Pca for longer, and who has had more treatments than I have had, may be in a position where they can have a more accurate prognosis.)
I read an article that looked at prognoses that doctors working in aged care facilities made about people in these places. Most of the prognoses made in this context were optimistic, some by quite a bit. The article speculated as to why this might be. As I recall, one theory was that most doctors became doctors in order to save lives. It is difficult for them emotionally to acknowledge that they have "failed" (as they may see it). They also may wish to shelter the patient from what they know will be a difficult scenario for the patient and their carers to hear. Doctors are people too!
To know how long one can reasonably expect to live opens a Pandora's box. Most people would find it incredibly confronting. Of course it would also have tremendous value. Our carers and dependants need to be provided for. I get all that. We are oriented toward certainty; ambiguity is hard to tolerate. Does this make us value certainty at the expense of accuracy?
I have learned to think about the outcome of my condition as being contingent on where the cancer manifests itself next. (It has certainly been encouraging to hear that there are things that can be done in scenarios that I would consider game over.) I try to be optimistic without being hopeful. Everyone needs to make these emotional adjustments - however they would describe them - in their own way.